5500 people are queuing to get personal assistance in the Belgian region of Flanders. A little less than 1800 have so far been granted personal budgets to employ their own assistants. There are organizations that provide administrative support and advice for those that want it.
According to Peter Lambreghts, from the Expertise Centre Independent Living, which disseminates information on personal assistance, there is still political opposition to the personal assistance reform, especially from political parties like the Christian democrats seeking to protect the financial interests of institutional care providers.
Cor Van Damme is on the waiting list to get personal assistance and works for Bol-Budiv that provides services to assistance users. He says that the system of personal assistance was introduced about 10 years ago, it began as an experiment, which was subsequently expanded and today a little less than 1800 people in Flanders have a PAB, Personal assistance budget, a cash grant paid to each individual which he / she hires assistants for. Each year the Authority "Flemish Agency for Disabled People" makes a budget for the support for persons with disabilities.
“Personal assistance is not a right, we do not even have the right to care / assisted living. Therefore there is a big problem with waiting lists, currently 5500 people are waiting for personal assistance, about 20 000 are on a waiting list for all the other types of care." says Cor Van Damme.
Are certain groups prioritized?
“Not really, but those with greater needs may normally get a decision quicker, my disability is not as extensive, so I'll have to wait. Many people with minor disabilities will never really catch up with and have to wait very long. In reality only people with fast degenerative diseases in a latter stadium get a budget within a year" says Cor Van Damme and adds that Bol-Budiv informs on personal assistance, is engaged in lobbying against the politicians to protect the reform, however, Bol-Budiv cannot recruit, train or recruit assistants.
“Bol-Budiv provides information to those receiving or seeking personal assistance, you can call us to get personal coaching and support in the role of employers. In Flanders all assistance users have to work as the three percent of all assistance users in Sweden who are employers of their own assistants." says Cor Van Damme
Peter Lambreghts is an assistance user and works at the Expertise centre Independent living that spreads awareness about personal assistance and cash payment systems. The center is also studying how personal assistance works in other countries and newly commissioned, for example, a report from the Independent Living Institute in Sweden about how the Swedish system works. Peter Lambreghts says that all persons with disabilities in Flanders have to turn to "Flemish Agency for Disabled People" whether it's for adjusting the home / car or if you seek care efforts or personal assistance. 35,000 in Flanders have some form of support, of these 24,000 are living in some kind of institution or day care centre, the other 10,000 have home service, 1768 have personal assistance
“They have a whole range of different forms of support where personal assistance is an "odd bird", it is the only form of assistance that breaks with the old health care solutions. “ says Peter Lambreghts.
The standard of the aid provided by institutions varies greatly according to Peter Lambreghts, some try to give good support but it is always limited to your home.
“We have so-called FOKUS-houses that are normal homes where residents have nearby staff that are on call all the time, but the system stops at the door, you cannot get support outside your home and many people want personal assistance to pursue activities outside the home" said Peter Lambreghts.
Peter Lambreghts has a more extensive disability than Cor Van Damme, and says that he was one of the first who sought personal assistant nine years ago, “I had to wait until 2005 before I got it, if I had tried five years ago, I had probably still been in the queue and not been able to get it in a very long time."
How it is decided how much assistance each person gets?
"The authorities use a questionnaire with the same questions for everyone, children get somewhat different questions. A social worker comes to your home, asks the questions and records the answers. Questions can be about if you can shower yourself, if you can walk, shop, travel by public transport and so on. “ said Peter.
An instrument is according to Peter Lambreghts good in the sense that all have the same starting point but he says that he never actually seen a good instrument in operation, he believes that it can be easily manipulated and give inaccurate results.
“I prefer an evaluation by an experienced social worker who thinks beyond the immediate issues and can see the big picture, an instrument also does not take into account the person's lifestyle. “
“Typically, a questionnaire has hundreds of questions" says Peter Lambreghts and according to the answers the person is placed in a category that determines the amount of assistance budget, the person may not grant a number of hours as in Sweden, but instead a certain amount of money.
“Based on the sum you must organize your assistance, how you organize it determines how many hours you have in practice. “ he says.
How high can the budget be?
“Max 41,000 euro per year, ie 3400 euros per month." says Peter.
How many hours of assistance may that be that most?
“It depends on how you spend the money, but a maximum of 50 hours per week, unfortunately it is far from enough for what many people really need. “
What do those who need more hours?
“Some may get unpaid help from relatives and friends, others may choose to pay their assistants as low wages as they can, which of course is not good for the quality. You can also take your own income, but not everybody can do that of course. “
There are strict rules on how the money is spent says Cor Van Damme, 95 percent must go to the assistants wages, five percent can be used as expenses for the assistants like movie tickets or travel tickets, the money can be used for buying administrative services like payroll administration and get ‘coaching’ from organizations like Bol-Budiv (or care counselors). This can be advice and support in how to handle the administration. It´s not possible to completely let the administration be done by a firm or cooperative like in Sweden, the assistance user always stay responsible for the administrative tasks and obligations towards his/her assistants and the government. Every three months the assistance user also must provide an account showing how the money has been used says Cor Van Damme.
“You cannot exploit the system by buying a TV or a trip. You must attach a copy of the employment agreement with your assistants. “
Can you save money for unforeseen expenses?
“Yes, within a twelve month period, but the end of each year you must pay back the funds you have not used. “ says Cor Van Damme.
Activities eligible for assistance in the assessment, according to Cor Van Damme focus on the physical support to help with transportation, cleaning, housework, shopping, cooking, washing clothes and so on.
“The assistant can follow you to studies and work and provide physical support, and care for your children. They cannot do medical work and you may not have time for things that are linked to your lifestyle and personal hobbies. I think the starting point is that the assistants do what I would have done if I didn’t had a disability. “
Can you appeal the decision?
“Yes, in the so-called "Arbeidsrechtbank" which is a court that decides in work-related matters. Bol-Budiv can help with advice and support in the process and help you to get in touch with a lawyer who is specialized in these matters. You might however have to pay the costs if you lose."
Can you keep the assistants in hospitals?
“These days one cannot, but it will soon be changed so that they can be with you at the hospital for up to three months, but you will then lose the assistance if you are more than three months in hospital. “
Can you get personal assistance if you are older than 65 years?
“No, but if you got it before 65, you keep it after 65. “
The legislation was pushed through by the Liberal, Green and Socialist parties. However, there is political opposition to the reform, says Peter Lambreghts.
“Yes, we have had to fight constantly in recent years to maintain the reform, the minister has always been a Christian Democrat, and they have generally been unhelpful and tried to keep this on as low level as possible, and they have even tried to make cuts, for example a suggestion that it should no longer be given to minors which they recently backed away from."
Peter Lambreghts says that The Christian Democrats are closely linked to operating institutions and in their lobbies they often try to defend their economic interests.
“I understand that you in Sweden are focused on people living in their own homes. We want to be like that in Flanders also, we want cash payment assistance as an opportunity for all with disabilities. We want to break the funding of institutions, but retain the right to buy a place there, for example on weekdays or weekends. “ says Peter.
The PGB experiment will end at the end of 2010, Peter is optimistic that it will be followed by the broader PGB system.
“It depends on politicians' choices but I hope that PGB will replace all care in kind support forms and will provide a budget for assistance and care from professional services (residential or not) in every combination wanted. PGB will be the switch over from supply steered to demand steered support. “
There is no specific union for assistants in Flanders, but the larger unions have been receiving cash payment system as a threat tells Peter Lambreghts.
“They defend those who work in institutions and see cash payment systems as a threat because there are no specific collective employment agreements with such things as holiday pay and pay for shifts. “
It is possible to hire assistants with the so-called "dienstencheques" which can be compared to domestic services in Sweden, where the person pays € 7 from their personal budget and then the state pays the rest of the salary, the same system applies when buying cleaning for your home. The system is regulated by minimum wages.
“In addition to the system, we can also employ assistants under contract with specified notice periods, pension contributions and so on. The unions have begun to swing in their attitudes to personal assistance, one of the two major unions have recently said they could accept the cash payment system."
Cor Van Damme and Peter Lambreghts want more people to receive personal assistance through cash payment, now it is too little and too many are on the waiting list. Peter Lambreghts also wants higher levels of budgets.
“The Swedish system is the best I've seen in operation, in particular the amount of money makes it possible to give a person what he / she needs. They also take into account the person's lifestyle, which is not possible in our system. “
Would you like to organizations that Bol-Budiv could act as an employer and be a user cooperative?
"Our goal is to get a cash payment system that applies to all, where the person also would be able to hire a cooperative employer. There is such a need for people with intellectual disabilities who need help with administrative tasks." says Peter.
What do you think about private companies as assistance providers?
“There are differing views on the support among users, but personally, I am in favor of a mixed market with profit-making enterprises to strengthen the effectiveness. This is a better alternative than having public management take care of everything. " says Peter Lambreghts.
Cor Van Damme sees some problems in the Swedish system which he hopes can be avoided in Flanders. He wonders what the advantage is that the municipality is responsible if the person does not need much assistance.
“It may well be differences between different municipalities and support rates. We see an advantage in having everything managed by one authority. “
Peter Lambreghts wonders if it is good that the power over how money is spent is taken over by the organizer when a user purchases personal assistance in Sweden.
“For me, it is important that I have control over what happens to the money. In Sweden, I would choose a cooperative that I trust. If I do not have control over the money, the government takes care of everything and then I have no choice or influence at all." said Peter Lambreghts.